A rambling collection of my thoughts about life, my children and crafty things

CHD Awareness Week

by purplegerberas on January 26, 2013

This week is CHD Awareness week and Samuel’s story has been featured on Stefanie’s blog at When Life Hands You a Broken Heart. Each year to raise awareness Stefanie has a guest post telling a story highlighting the most common birth defect. Today is my turn!

Samuel was born at full term after a good pregnancy and a fantastic labour (never thought I’d say something like that). His older sisters arrival had been more traumatic for me so I was relieved and feeling very relaxed at the arrival of our second child. We had had a quick discharge from hospital so our GP visited us at home the following day and a full newborn examination did not reveal anything unusual.

Our daughter Eloise had been a ‘good’ baby – very content and quiet and we had joked many times that we were not going to be as lucky second time around but surprisingly we were, if not luckier. Samuel was very quiet, rarely cried and slept beautifully. My only complaint with him was his feeding. Although I was bottle feeding it was difficult to get more than an ounce of milk into him at a time. We would have to dedicate an hour to feeding him and it often became a battle to keep him awake or get any milk into him at all.

When he was two weeks old I took him to see our health visitor who quickly dismissed my concerns. Without looking at Samuel she simply said that she sensed some anxiety and I ‘needed to learn not to put my mental health problems onto my baby. I was devastated by this reaction. Was it all my fault? I went home and cried for the first time since he was born. Over the next two weeks I saw the health visitor twice more and again was told there was nothing wrong with him. The last occasion was at baby clinic. I’d gone armed with a list of how much milk Samuel had had over the previous few days. I knew it wasn’t enough. I showed her the list, Samuel was weighed and he had put on weight. I was then told if my list was correct then ‘he wouldn’t be putting on weight would he?’ Again, I was left upset at the realisation that they simply did not believe me. His breathing appeared fast at this appointment and they felt that he had a cold and advised me to see our GP.

We went to the doctors that evening and soon found ourselves on the way to our local hospital. Here they felt he had bronchiolitis and decided to keep him in overnight for observation. We were asked many questions about his feeding. The doctors believed me about the poor quantities but asked repeatedly why I had failed to do anything about it. This added to my upset as I’d spent two weeks raising concerns without anyone taking me seriously and now felt I was being seen as neglectful. Overnight Samuels oxygen saturations deteriorated. They were low and the machine was blamed (they couldn’t possibly be that low). A second machine was tried and that was ‘broken’ as well. A third machine was found and it gave the same low reading. He was started on oxygen but the machine seemed to get the blame rather than realising that his sats were that low.

The ward round the next morning brought a new team of doctors and one thought he heard a slight heart murmur. We were reassured that this was probably nothing. An echo would be arranged and we shouldn’t worry about it. Later that day Samuel went for the echo and the rest is history.

It was found that he had critical aortic stenosis, was in severe heart failure and was actually very seriously ill although at that point you wouldn’t really know to look at him. The following hours passed like a traumatic dream. Samuel arrested, he needed to be ventilated but his heart failure was too bad. He was put onto CPAP and we were told that we simply had to hope for the best. They struggled to find an intensive care bed for him. The closest one was in central London 70 miles away. We had had heavy snow that day and during the evening severe fog had set in. A helicopter transfer was not a possibility and London was deemed too far – Samuel was unlikely to survive the journey. Eventually a bed was found at Oxford which was closer. He was transferred there but again we were warned that there was a possibility that he would die on route. It was a slow and difficult journey as the weather was so bad. I still wonder now how I actually managed to drive Steven and I there in one piece. I remember I spent most of the journey wondering how we would afford to pay for his funeral.

He made it there safely though with no drama. The following day he had a balloon valvoplasty and returned from theatre as completely different baby. He cried, he was awake, he smiled, he made noise and he would down a complete bottle of milk in about 15 minutes. He was discharged home on Christmas Day.

Since then we have been lucky. Three years have passed and Samuels health in general has been good. He does need a valve replacement but at present we’re watching and waiting for that time. His heart function isn’t perfect but he copes well with it. Winter and colds present problems but during the summer months he appears completely normal. His heart doesn’t seem to hold him back and he has grown into a very happy and bright little man. My worries about CHD always looming and dominating our lives have gradually faded.

It took me some time to get used to the idea of Samuels CHD and learning to cope with the uncertainty of the future and also the idea of facing major heart surgery. I had a huge amount of anger over his delayed diagnosis. I had felt dismissed and made to feel at fault over his condition. As a nurse I was horrified at myself that I failed to notice my own child was in severe heart failure. I also know that had he arrested at home his chances of survival would have been almost non existent. Samuel’s development is normal and we are fortunate that he appears to have no long term effects of the heart failure and arrest. I found that there was a lack of information on CHD. Despite being the most common birth defect there is such little awareness. I knew nothing of CHD myself. A trip to my local library revealed three shelves dedicated to books on ADHD but not a single book on CHD existed in the entire county. The early days were very lonely with a struggle to get support close to home. Online forums have helped my sanity many times. A positive aspect of CHD is being part of a caring online heart community.

In 2012 in the UK the Children’s Heart Federation launched the ‘Think Heart’ campaign [http://www.chfed.org.uk/home/campaigns/thinkheart/]. This is a simple tool aimed at both parents and professionals to raise awareness of the symptoms of an undiagnosed heart defect. Information, leaflet and posters are being distributed to midwives, health visitors and doctors to help bring attention to the commonest birth defect. Parents are also spreading the word at parent groups, amongst friends and giving out leaflets and posters where possible. I’m very supportive of Think Heart and also the pulse oximetry campaign. I believe both would have made a huge difference to Samuel. He may have been diagnosed earlier preventing an arrest and that uncertain hospital transfer. I may have had the courage to have seek a second opinion earlier rather than question myself and my mental health We would have been saved much trauma and anguish. I’ve learnt since that in the UK there has been a huge emphasis on post natal depression for health visitors. I believe that this was at the detriment to my son – his physical illness was interpreted as my mental health problem. Both pulse ox and Think Heart are really simple concepts that increase awareness of CHD to both professionals and parents. For a very small cost outlay lives can be saved, long term disabilities may be prevented and parents can be saved trauma. In the UK pulse ox is being examined with a strong possibility that it will become a standard part of the newborn examination this year. The professionals are doing their part, as parents it is up to us promote, share and shout about Think Heart and place it higher on everyone’s agenda.

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2 responses to “CHD Awareness Week”

I read your post on my friend Stef’s site. Before I even got to the end of your post I knew your son’s diagnosis. Our son Zeb also has Critical Aortic. Stenosis. He is almost 6 now and doing well. I’m going to keep up with your blog. My blog is way behind….ugh. I also have a Facebook …I hate this CHD but I am always happy to find someone who can know exactly what we go through. Blessings to you and Samuel.
Rhonda Lyle

[…] The other is by my very beautiful and lovely friend who has a son who shares my lovely sons birthday. We met when she was pregnant with her daughter and I was pregnant with my son, both due in December we became friends. Then fast forward a few years and on my sons 3rd birthday she had Samuel. He is gorgeous let me tell you but they faced a really terrifying time when he was just a month old. I want you to read about it so you have reinforcement to always trust your instincts. Happy ending don’t wor… […]